Now that I think about it, a cholesteatoma can really change your life. My name is Levi and a cholesteatoma changed my life. I was 9 years old when I was told I had a cholesteatoma. I wasn’t too scared because I didn’t know what it was.

“I was extremely scared Levi could lose his hearing,” said my mom.

A large growth in the middle ear called a cholesteatoma. How does it change your life? Credit: Welleshik via Wikimedia Commons.

A cholesteatoma is a skin growth in the middle ear behind the ear drum. It usually occurs because of a poor Eustachian tube function. An Eustachian tube is a 1.4-inch tube in your ear that equalizes the ears pressure.

A cholesteatoma is a very serious but treatable skin growth in the middle ear behind the eardrum, according to the American Academy of Otolaryngology-Head and Neck Surgery. If left to grow, it can cause loss of balance because the sense of balance, or vestibular system, could be destroyed. Some of the symptoms are ear drainage and dizziness. The presence of a tumor can be confirmed by a surgeon.

I didn’t know I had a tumor until my ear doctor told me, “I couldn’t feel it.” The doctors found the tumor because I was having tubes put in my ears at Children’s Hospital in St. Louis, because my other pair of tubes fell out. When the doctors saw the tumor, they realized what it was. That was when I learned I had a cholesteatoma and another surgery to remove it was on the way. 

The surgery was supposed to be six hours long; it ended up being nine hours. The surgeons cut behind my ear, flipped it forward, and then removed the tumor. They also had to go in through my ear canal to get the rest of the tumor out. The tumor eroded pieces of my eardrum, so the doctors replaced the parts of my eardrum with pieces of titanium.

After surgery, no water is allowed in the ear. I learned from my doctor, Timothy Hullar, of Pediatric Otolaryngology Specialists and Washington University School of Medicine, that most must people who have this surgery wear an ear plug when swimming and even taking a shower. The ear plug is made of flexible silicon. The ear is weakened from the surgery and so the ear can get infected very easily.

A cross section of the ear showing the eardrum and Eustachian tube. Credit: National Institutes of Health.

The first ear plug I had was camouflaged dark green, and I lost it on a camping trip. I have also melted it in the sun just enough to make it not work. To go scuba diving, you must fill out a health form. I failed. After the surgery, you’re not allowed to go scuba diving for the rest of your life. According to, you need to equalize the pressure in the ear as you scuba dive. My damaged Eustachian tube can’t equalize the pressure when scuba diving.

I am doing fine now. I can still hear out of the ear the cholesteatoma was in, but my hearing in that ear is not the best. I can’t hear high pitched noises that well. I have to go to my ear doctor every six months to check my hearing and to make sure the tumor doesn’t grow back. I will have to go every six months for the rest of my life.

Levi T. Buerk

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  1. :smile Wow Levi I remember when you had this done. Thanks for explaining all the big words, Ty and Chase were confused! Love you!